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Leukaemia - ALL - anyone else's child being/ been treated?

(5 Posts)
Puffykins Fri 17-Mar-17 20:31:50

DS (6) was diagnosed with leukaemia - ALL - on Valentine's Day. We're nearly at the end of the first round of chemo - the induction - and I just wondered if anyone else is going through this - or has been through this - and might be able to let me know more about what we can expect over the next three and a half years of treatment. The doctors are all being amazing, but I'd love practical advice (and hope!) from other parents.

At the moment I think the thing I'm struggling with the most is the just not knowing what any chemo cycle looks like before we start it, which makes planning anything impossible: work (temporarily paused - but I miss it) childcare and the Easter holidays (DD is 4).

Also the side effects of the chemo - and the steroids - they turn DS into a different (crosser - and hyper) child. And while I do massively appreciate being able to spend lots of time with him at the moment, I'd love him to be more recognisably him - do the side effects get better or worse as treatment continues? Right now his concentration is shot, he's often aggressive, etc.

Finally, I would love to find him some emotional support/ therapy that isn't me - if he needs it? Is that a good idea?

Basically I need to know all of it.....

Grandmasterglitch Fri 17-Mar-17 21:18:18

Hi, so sorry to hear about your son. I was diagnosed with ALL at 21. I made a complete recovery and went on to have my DCs naturally despite Dr's telling me the chemo would leave me infertile. So there is definitely hope for you and your son!
The first treatment phase is intense and is hard to cope with. It lessens as it goes on and you'll find it easier o slot it into your normal life. I can't remember at what point it got less intense but I did have some serious complications which set me back a couple of months and I still went back to work less than a year into my treatment. Was socialising in tiny bursts before that, so it DOES ease off. Stay strong!
As for his behaviour - the steroids made me incredibly depressed, angry and tearful. I had a horrid temper and I couldn't concentrate on anything even watching TV for the first couple of months. Again that gets less over time and the first couple of months really were the worst so you are almost through the most intense part. Afraid I can't help you with any pediatric specifics as I was an adult patient but absolutely get In touch with CLIC Sargent as they were very helpful and specialise in children's cases. Please PM me if I can help you at all, but to me is like a bad dream now rather than being something that defines me.
My mum never left me - she put up with my temper and tears, she held my hand and slept by my hospital bed. She probably had it worse than I did tbh as now I'm a parent I understand how she must've felt. But in return we have the most amazing and close relationship now and we have a very special bond that was forged during that long treatment. Your son will one day look back on this time as the time he realised what an amazing mum you are.

Grandmasterglitch Fri 17-Mar-17 21:26:11

Also about the side effects - everyone is different and it depends on what drugs he is having but as it went on I developed a routine of what days would be good/bad and that really helped me to cope. On the whole, they ease off over time but you have to watch for anemia and the like which comes on every so often and depletes you a bit. Also the neutropenia and the way you cope with being immune suppressed in a world where people on mums net will take kids to school with chicken pox etc - all I can say is be vigilant and if in doubt don't risk it. I got a cold which turned into flu which hospitalised me for two weeks over Christmas. I was given the cold by a friend who ignored my rules about infectious illnesses, so ensure that you protect him from idiotic people!! Let him eat whatever he wants whenever he wants - I lived off potato waffles and cheese for two years and it didn't seem to do me much harm in the long run but it certainly was comforting to eat what I wanted when I felt so ill. Cancer is such a bastard, I really am sorry for your DS and I wish him an easy journey to the finishing line.

Puffykins Fri 17-Mar-17 22:13:04

Thank you SO much Grandmaster - I so appreciate this, and it's really helpful, and encouraging, to read. I'm so pleased that you got through it, and that your fertility wasn't affected. I'm trying to be the best mother I can be, but it's not always easy - I'll try to live up to your mother! Thank you again. And I'll totally bare in mind what you say about food - we had to limit it a bit (he was literally eating so many chicken sandwiches he was sick) but I'll make sure I really listen to what we wants - it's a fine balance between making him feel like he's in charge of something, and wanting to make what I believe to be the best decisions for him (I.e. More broccoli, fewer chips.)

Labtest7 Sat 18-Mar-17 13:31:45

Hi Puffykins, my daughter was diagnosed with ALL in June 2011 at the age of 4. She was treated at the RVI in Newcastle. She's ten now and just had her 3 and a half years post treatment check where all is well. I'm sorry you are dealing with this but the outlook for children with ALL is very good.

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